Psychosocial Care in a Pediatric Intensive Care Setting

Editor’s note: This text-based course is an edited transcript of the webinar, Psychosocial Care in a Pediatric Intensive Care Setting, presented by Joslyn Kenowitz, PhD.

Learning Outcomes

Agenda and Overview

The agenda for this course is as follows:

• Patient and Family Functioning
• Psychosocial Care
• Family Centered Care
• The Multidisciplinary Team
• Providing Emotional Support 

In terms of patient and family functioning, I will discuss the stressors that you may see in families. I'll talk about what psychosocial care is, what I do in my role and the role of other psychosocial care providers. We will review family-centered care and why this is important in this type of setting. We'll move into the multidisciplinary team, discuss a number of case examples, outlining how a multidisciplinary team can work to provide psychosocial care. We will end with a review of some tools for providing emotional support to families and patients in the pediatric intensive care setting.

The Intensive Care Unit 

Many of you are familiar with an intensive care unit (ICU), but it's worth a review of some of the factors and realities at play in the ICU. Medical professionals who work in the ICU every day become habituated to the sights, sounds, and happenings that are a part of our day-to-day care. It is not an atypical or abnormal setting for us, but for families, the experience is vastly different. The ICU is foreign, it's cold, and there's a completely new language to learn. For families, this setting is anything but normal. If a child is in this type of setting it also means that the child is extremely ill and requires a very high level of care. For families, it also means that they may have to watch their child go through multiple painful procedures a day. While we can't always completely put ourselves in a family's shoes, we can keep these factors in mind when we interact with families. Considering what may be contributing to their overall experience and reality can help us to provide compassionate care for our patients and families.

Stressors in the ICU

Research tells us that there are many, many stressors in the ICU setting. Children do not look as they normally do - they are hooked up to machines and IVs, they may be sedated, unconscious or not very alert. Likely, some children in the ICU are experiencing some pain. Families also describe their child's behavior in this setting as a source of stress. Their child is often not doing the things they would normally do as a result of their illness, or as a result of the medical devices that are being used as a part of their treatment. Illness severity is a source of stress - both the actual severity of the illness and the family's perceived severity of the illness. In terms of the differing realities between providers and families, a child in the ICU may be typically presenting for us in this setting, but families may perceive illness as much more severe because this is a new experience for them.

Regarding the ICU environment, the sights and sounds can be stressors: there are bright lights, loud sounds like the beeping of equipment, and there's also very little privacy. In my setting, with the exception of a few rooms, the ICU is very open. There are only curtains to provide families with privacy as they spend time with their child or may try to have some difficult conversations.

In regards to stressors related to the family, we have factors such as parent mental health. If a parent has a history of anxiety, it can be exacerbated with the additional stress of the ICU setting and treatment of their child. Family members may also have to take on some different roles and responsibilities. Other children may be doing different tasks than they would normally do. Parents may need to adjust work schedules, and families also report that the ICU is an isolating environment. They are often alone, sitting with their child, and it is hard to relate to friends and family who are not going through the same thing.

Additionally, role alteration is a stressor. Families may be used to caring for their child in a certain way, and within the ICU setting, that becomes very different. Parents may not be able to hold, feed, or even touch their child. There are feelings of sadness, guilt, and loss when parents are unable to care for the child in the way that they would like to and are used to doing. All of these stressors combine with others and create much distress for families as they navigate this new setting.

Impact of Stressors 

The impact of stress is variable - it can be both short and long term, and it can be present both psychologically and physically.

For the child, we may see behavioral and mood changes. There may be irritability, anxiety, posttraumatic stress-like symptoms and hypervigilance. There may be some cognitive, memory, and attention changes, and there can be changes in self-esteem. We also have to remember that an ICU stay means a child has missed some school, and has also missed some time with family and friends. and again, this can all impact a child's day-to-day functioning, and how they're feeling, and how they're behaving. For parents, there are absolutely some overlaps in terms of that post-traumatic stress, anxiety, and depression. Parents also describe a number of additional feelings such as anger, guilt, shame, sadness, fear, and a lot of uncertainty as we all know how quickly things can change in this type of setting. Again, families can experience changes in those social relationships and some physical signs of stress. So we know from research that we can see great variation in things like heart rate and blood pressure. I actually recently worked with a family whose child was undergoing a heart transplant, and mom had developed some syncopal episodes that were triggered by some of the stressors the family was going through in the hospital setting and so as a team, we needed to understand that and be able to communicate with mom in a way that she had time to process information, and that also allowed her to take some breaks from the hospital so she could take care of her own health, and make sure she was feeling her best and able to engage with her child in this type of setting. So again, there's a lot of variability in how long-term distress and even just acute distress can impact what a child or what a family looks like in an ICU.

Psychosocial Care in an ICU

Psychosocial care refers to addressing behavior, emotion, and social functioning. The goal is to decrease distress with the hope that we can then improve outcomes. As discussed, these outcomes can be variable, depending on the presenting problems and the family. It may be that we are hoping to improve coping, mood and anxiety, including improving procedural anxiety and coping with medical procedures. Later in this presentation, I will review some case examples to show how our overall interventions may be implemented within an ICU setting.

The Psychosocial Team

The psychosocial team can look differently for each hospital. Most commonly, the team will include a social worker, but it may include other team members. I'm fortunate to work with a large psychosocial team comprised of me (a psychologist), as well as a social worker, and a child life specialist. If you are putting together a psychosocial team, these three roles are recommended. There is overlap in our specialty areas, but we also each have expertise in certain areas. For example, our child life therapist has a lot of expertise in explaining medical procedures in developmentally appropriate ways, and helping children cope during procedures such as sedated MRI or getting a PICC line or IV placed.  We have turned over those areas to her as a specialty provider.  

Psychosocial Assessment 

What does the psychosocial team do? First and foremost, we conduct an assessment. We want to learn about a family. With an assessment, we're looking to identify a family's strengths, and identify potential barriers to engagement and care.

At my institution, our different psychosocial team members may assess these domains:

• Family support
• Transportation
• Finances
• Aspects of culture and beliefs important to the family
• Coping style
• Communication preferences
• Learning/Education needs

In terms of family support, we look at family relationships. Who is the primary caregiver? How does the family communicate with one another? Also, what does their extended support look like? Are there family members and friends close by? If not, are there family members and friends that are able to provide remote support? Given COVID, we are all getting more comfortable with remote support.

Transportation and finances can absolutely be stressors and barriers for a family. How does a family get to the hospital? How far away do they live? If a family is commuting an hour back and forth to the ICU, this is an added source of stress. Regarding payment and insurance, there can often be barriers we need to work through with families to make sure that their care is covered and that they are feeling comfortable We also discuss aspects of culture and beliefs that are important to the family. Are faith and prayer an important aspect of a family's coping or beliefs? What have families had, or what are their beliefs in terms of medications, medical providers, and prior experience in this area? We also assess if there are certain traditions or cultural issues that dictate communication or information practices. For example, in working with a Latino family recently, the parents described to us that the father was the head of the family. They said that he is often the one who may do most of the communication and this is what the family preferred, based on their traditions and customs. That information was very helpful as we worked closely with that family, and we had good communication and interactions with the family that met their needs.

It is also important to understand the family's coping style. How do they typically deal with stress? Is exercise important, or is music, or being able to access friends and family? If those are not accessible in the hospital setting, is taking a break from the hospital an important aspect of their coping? Is being able to go home at night an important aspect of their coping? How can we enhance their typical coping style now that they're in a different setting?

Communication preferences and learning needs are also areas that we assess with families to find out their preferences. Some families will say they love visual tools and handouts, other families are fine with verbal communication. Communication preferences not only vary across families but within them as well. For example, I was working with a set of parents recently where mom said, "I want every single detail including all the information from rounds and updates from nursing when I call in". She utilized that information as part of her coping, and also to learn more about her child's illness. The dad, on the other hand, said, "If you tell me he's good, I'm good. That's what I need to cope, and that's the type of information I prefer." If we had not assessed or known that, we would not be communicating with this family in a way that worked best for them. When I get into the case examples, I will show you how all of those things come together when caring for patients and families.

Prevention and Intervention

In psychosocial care, not just in the ICU, but in general, there are two broad categories of intervention. The first is prevention. If you think about going to your primary care provider for a check-up once per year when nothing's wrong, this is what consider preventative care. We do this with psychosocial care as well. With psychosocial care, preventative care may be a universal screening, where we have every family, or every parent or child fill out a measure of distress, or coping, or emotional functioning. Preventative care also may mean doing an assessment with every family who's admitted to our unit, regardless of whether we may think there is something challenging or impacting the family's care. When we're able to meet these families, it allows us to get to know the families. It allows us to gather information on all of the domains we previously discussed. It also normalizes mental health or psychosocial care. When I go in to meet families, I am an integrated part of our care. I meet with most of them, and I will often say, "Many families tell us being in the hospital can be really stressful and overwhelming. I'm wondering what the experience has been like for you. I'm hoping to learn a little bit more about how you and your family are doing". This gives us a chance to integrate ourselves within the setting so that families know they have an additional level of support as needed.

After universal screening or assessment, we then tailor our support based on the family's requests and needs. In other cases, however, there may be a challenge or problem where we need to intervene.  It can be related to a number of things including mood, behavior, development, adherence, family coping/engagement, procedural support, communication and decision making, and end of life care.

Regarding a child's mood - maybe there is anxiety or low mood that impacts their engagement and/or care. Oppositional behaviors can impact care. Does the care we're providing match this child's developmental level and needs? Do they need additional services to help with their developmental progress while they're in an ICU setting? Adherence refers to whether a child is struggling with taking medication or following a routine that is required as part of their care. If a family is struggling to engage in certain parts of their care, or to cope overall with the distress related to this setting, that is absolutely something we provide some intervention on. Procedural support is an area our child life specialist helps with - procedures vary but can include MRIs, cardiac catheters, placing IVs and PICC lines, and sometimes pill swallowing. Communication and decision-making refers to the interaction between the providers and the family. Is it done in a way that everyone feels like they're on the same page? In an ICU setting, we also need to address a family's goals and wishes around end-of-life care.

Family-Centered Care

Family-centered care in a pediatric setting is a partnership between parents and providers. It is fundamentally based on the understanding that a family and caregivers are significant sources of support for a child. It highlights the benefits of partnering with families and acknowledging how integral they are to a patient's care. We know that family-centered care promotes better communication between providers and families, helps facilitate the decision-making process, and results in better outcomes. We see better adherence to appointments in the long term, better family coping, and better parent and provider or family and provider relationships.

In the ICU, family-centered care can be more difficult to utilize due to the nature of the care. The fast-paced acute setting often requires quick decision-making. Parents may or may not always be at the bedside or able to participate due to the acuity of illness. Research on family-centered care in the ICU is limited. However, what we do know from a literature review, is that there is a varying degree of parental roles and needs, meaning that there are different levels of involvement from parents in this setting. The review also found that there was little discussion between parents and providers regarding communication and negotiation of these roles. The review also highlighted that there is a gap between parent's wishes and what actually happens in the ICU. We also know from research that parents are often not asked about their preferences within an ICU setting. While a lot of the decision-making is on a medical level, providers need to know families' preferences in order to provide the most compassionate and sensitive care.  We can integrate families into the intensive care setting. The case examples will illustrate why their involvement is so important in psychosocial care, and ultimately in a child's medical care and overall well-being.

The Multidisciplinary Team

Even though there are providers like myself who have specialty knowledge and training in psychosocial care and interventions, we do not act alone. The ICU is an integrated multidisciplinary setting, and so we act as a large team to provide care including psychosocial support. 

In addition to the psychosocial team, some common members of a child's team in the ICU setting are nurses, physicians, therapists, case managers, specialists, family members. I cannot emphasize how important families are, as part of the child's team. 

Some of these other team members may be part of a child's daily care. Therapists may include their respiratory therapists, physical, occupational, speech and feeding therapists. Case managers may manage and support things like discharge, supplies, and insurance to help a family's care go smoothly. Specialty providers may not be part of the ICU day-to-day care but may be consulted when needed. For example, we often consult with palliative care, or pulmonology, or other specialty providers who are part of the treatment team. 

Case Example 1 

Let's go through our first case example. This case is a 14-year-old boy who is post-heart transplant. He has a history of attention deficit hyperactivity disorder (ADHD), and has some difficulty with attention and impulsivity concentration. He also has some overall developmental delays. He has been experiencing low mood in the context of the hospital setting. He was a healthy child who became acutely ill and had to immediately be put on ECMO prior to his transplant. This was a whirlwind situation for the family.

I was contacted to provide overall support to this family and child as he was recovering. He was resisting some important aspects of his care, including physical therapy and occupational therapy. He was being somewhat challenging towards staff in terms of his language and behavior, and it was becoming very difficult to have his care go the way that the team wanted it to.

After my assessment, considerations for his care included: developmental needs, coping style, motivators, and family relationships. The first consideration was his developmental needs. While I knew he was 14, developmentally, he was closer to a 10 or 11-year-old in terms of his understanding and functional status. What I had so far understood about his coping style was that if something bothered him or didn't feel good to him, he would often try and avoid it. He would zone out to TV, keep his lights off so no one would come into his room, and not discuss or engage in things that made him uncomfortable. I also happened to know in working with his mom and talking with him, that there were a few things that motivated him.  He was super motivated by these special smoothies at the hospital, motivated to go home, and motivated by earning some TV time at the hospital. I also knew that his family was extremely stressed by his medical condition. They were trying to manage work schedules, and they also had another child at home. The parents needed breaks from the hospital to help them cope and to be able to fully engage in his care in a way that felt good for them. We also saw a pattern - when parents were not at the hospital, we saw a higher level of oppositional and challenging behaviors. In this case, there were a lot of factors, complexity, and people involved in his care.

Here is what we did. First, I consulted with his family regarding strategies they use at home. If he was non-compliant or became oppositional in some regard, how did the family want this to be handled? What strategies worked and didn't work at home that we could try and replicate at the hospital to increase our level of success? We came up with a list of rewards that his family was comfortable using, and our child life specialist created a specific chart about specific goal behaviors. The chart included what this child had to do in order to get access to some of the rewards his mom had agreed upon. The chart was put in his room so that every provider had access to it and knew how to reinforce and engage with it. We also provided some guidance to staff about how to manage certain behaviors. We talked a lot about ignoring versus praise, and how that could impact this child's engagement and behavior in a way that was going to also help him medically move forward. We were fortunate in that we had a lot of success. This child did extremely well with our chart system. As you can tell, it was a team effort. Nursing, therapists, psychosocial team members, and the family provided us with guidance along the way. This family was not necessarily always present at the hospital and so we were able to engage them remotely in working through this care.

Case Example 2

In our second case example, the patient is also a teenager. This teenager also has cardiac issues. He has congenital heart disease and had already gone through multiple cardiac surgeries and a stroke. He also was having worsening heart failure and early in the year had declined a heart transplant, due to the high-risk physiology. His care was currently being mostly managed at home with our palliative care team. He came back into the hospital with some worsening symptoms indicative of that worsening heart failure. We noticed when he came back in that was that he was extremely anxious. He was insistent on wanting to stop his medications as he said they were too much for him, and he was done with this part of his care. The staff was also extremely upset. They'd had a lot of experience with this family, and found it difficult to manage feelings around this child potentially wanting to stop his life-prolonging care.

After working through our assessment, some additional considerations stood out as important parts of creating a plan for this child.

This child was 15, but we know he had an intellectual disability, and so that was going to impact how we were helping this child and family make decisions. We also needed to ensure that we were communicating with him in a way that matched his developmental level. We also needed to consider and understand his goals, as well as his family's goals for his quality of life. Additionally, we had to consider our own team's boundaries, knowing how invested everyone was in the emotional aspects of this child. We knew that this child's decisions could potentially be at odds with team members who wanted him to continue going on with some of his medications.

The team first approached me about working with him to manage some of the anxiety. I began to visit with him, and help him with language around how he was feeling. I gave him some strategies to manage his anxiety when he noticed it was becoming worse. We used a number of examples and even some play with his favorite stuffed animal and toys around conversations around anxiety. We talked about what he would tell a friend to do. The other thing we pieced out were his wishes for his care. We found that because he was very anxious, he was doing a lot of what can be referred to as reassurance checking. He was checking in with multiple staff members about if things were okay, if his decision was the right one, and it was sort of making it hard to tell exactly what he was hoping to do moving forward. By streamlining some of his care, we were able to understand his specific wishes and his mom's specific wishes, and we helped communicate them to the team to inform his treatment plan. There was a lot of consultation between the psychosocial team including myself, our palliative care team who had been very involved with his care, his cardiac team, and his nurses. I was able to help be a voice for him throughout some of these consultations. Another important piece of our work was reviewing end-of-life decision-making in adolescence. We reviewed guidance from the literature on this topic as well as on decision-making in children who had some developmental or intellectual disabilities. Additionally, we gave some tips to the nurses about how to best respond to this child and we also provided them with support, knowing this was an extremely emotional and challenging situation. In the end, we discovered that the biggest wish this patient had was to reduce his medication. He had specific goals and activities he wanted to achieve before his medical condition worsened and he would have to be re-admitted. The medical team was able to help reduce his medication load while still making his symptoms manageable. We were able to get him back home with palliative care safely.

Case Example 3

This patient is a five-month-old infant with significant developmental delays, congenital heart disease, and multiple complex medical conditions in terms of her GI and her respiratory status. Prior to this family coming into the hospital setting, she was at home and the family had declined some developmental services for her. When she was brought into our intensive care unit, her caregiver was understandably extremely distressed. The caregiver was having a difficult time engaging in the different therapeutic services, including physical therapy and occupational therapy, which were going to be a large part of this patient's treatment and care.

An additional consideration for care that we learned during the assessment with this family was regarding the mom's overall mental health. Her distress and anxiety were impacting her ability to engage the way that she wanted to. There was also significant role alteration in that mom had been home with her child and was used to holding her, feeding her, and being able to care for her. None of that was available to her when they came in initially, because of the acute illness. The mother had a difficult time trying to figure out what her role should be in her child's care in this vastly new setting.

Additionally, in speaking with the mother, I learned that she and her family were from Mexico, and they had a strong belief in a medicine man that they often consulted with for medical issues. The medicine man was a source of support and comfort and was very important to her in terms of her culture and traditions. When communicating with her, I would make it a point to ask about him, and how she was integrating her consultation with the medicine man into the information she was getting from her medical team.

In talking with her and then with the team, there was a mismatch between what the mother felt were some of the biggest issues in her child's care, and what the team felt were the biggest issues. For example, the team was focused on the child's feeding and growth, which was not an area of concern for the mother. In fact, every time the team brought this up in rounds, mom would get upset and shut down, noticeably disengaging with the team. What I learned from her when we were piecing this out, is that she felt extremely guilty, and she felt like this part of her child's care was her fault. She felt she had done something wrong in not being able to feed and help her child grow the way a mother should. That was what was resulting in her shutdown or withdrawal from those interactions with the team.

This child's course of illness was extreme. The child became more and more critical as time went on, and the mother became more and more distressed. A common theme that I see in families is that family functioning is directly tied to the child's progress. I hear statements such as, "My child's having a good day, which means I'm having a good day and coping well today". As this child was declining medically, the mother was also experiencing some of that from an emotional perspective. I worked with our social worker to put more structured support in place where we did weekly check-ins with this mom. Within those weekly check-ins, we were able to continuously pull out more of that anxiety, beliefs about care, and communicate that with her team to get us all on the same page. Our therapy providers also were able to provide education in a way the mother could hear about their services and why they were important. They were then able to engage her in specific activities she could do with her child, which hit on that point of figuring out how to have the mother care for her child. The therapy providers were able to help the mother see that there were things she could still do and that she was still an integrated, important aspect of her child's care. Additionally, we were able to pull out the mother's priorities and concerns and meld them with those of the medical team so that everyone could understand where the other was coming from. From there we could formulate a treatment plan where everyone was feeling more supported.

Case Example 4

In our final case example, the patient is an infant with congenital heart disease and a significant genetic condition. Unlike the child in the previous case, this baby had been in our intensive care unit since birth. She was transferred directly from her birth hospital and the parents did not have any time with her at home. Parents' distress was becoming heightened as this mother had seen her child go into cardiac arrest twice, once during a time when she was holding her and so there were trauma-like symptoms that were beginning to come out. The sights and the sounds of the CICU were therefore extremely triggering - every beep, every cough, every new needle was a trigger for these parents in terms of their emotional reaction, which heightened their own arousal and heightened their own distress. In addition, the parents were feeling some grief and loss related to their expectations of caring for this child.

Considerations for care included the impact of stress on the parents' functioning and engagement in care and with the team. These family relationships and role alterations we discussed came into play as these parents were unable to touch, hold, and feed their child. The other consideration for care was communication preferences and needs. This family lived several hours away from our hospital. The father had to go back to work and the mother stayed at the hospital, which meant the parents were separated during this time. The mother was feeling overwhelmed with trying to update her family and her partner about her child's care. It was also difficult for her to relate to her peers at this point, who had previously been a large source of support for her. Each parent had some different communication and coping strategies that were in fact, impacting their ability to interact and communicate with one another in a way that felt good for them. We had to think about how to modify our approach with this family, because there was clearly a lot of distress, impacting their overall experience and care. 

We provided some ongoing psychosocial support to the parents. We talked about what coping skills they utilize, and how we could add on to their toolkit. We talked about the importance of setting routines, and then we also talked about setting some boundaries for visiting at the hospital. Instead of staying all day, were chunks of time better for this parent? That did end up reducing some distress. We elicited the family's communication and learning preferences, and then we also scheduled some family meetings and team meetings. We scheduled meetings with both the parents and team together, making sure that the father could call in from home so that parents were getting some updates on their child's care. This was a chance for them to have some questions or concerns addressed as well, in a more scheduled and standardized way.

Case Examples - Summary

My hope is that you see a theme emerge from all of these cases. In thinking about a family and child's emotional, behavior, and social well-being, we must integrate information from the family, as well as take advantage of the expertise of all the members of the care team. By integrating these unique family and provider perspectives, we can provide really good care. We first need to always make sure that parents are aware of how integral they are to their child's care, which is the concept of family-centered care. 

Tools for the Multidisciplinary Team 

Multidisciplinary care teams need certain tools, mainly communication tools, to be able to make psychosocial care work effectively. There are many different ways that communication happens informally. I will walk down the hall and catch a provider that I wanted to fill in or discuss a concern. We may have texts and calls, and we may send messages through the electronic medical record (EMR). There are typically informal, ongoing conversations regarding the family's progress and what they need. We also have more formal and scheduled time set aside to make sure that we are reviewing a family's progress. In my work setting, we have multidisciplinary rounds, once per week, in which physicians, nurses, therapists, and psychosocial team members meet. We briefly review medical updates, but the majority of the time is spent on patient and family's progress, what their needs are, and if we're missing anything. Do they need additional support? Do they need additional services? Are there aspects about the family's coping and functioning that would be important for us all to know? Is there something about the family schedule that would be important for us to know so that we can engage them in care best? We also have developmental care rounds, which may be unique to a cardiac center, or a NICU, in that we're making sure our care matches the developmental needs of our patients, who are largely infants. Finally, we also have inpatient meetings in which we are making sure the flow of care and services are also working best for families. There may also be floor rounds in which each team goes from room to room and provides updates, oftentimes directly to the family.

All of these opportunities to communicate are what allows a team to synthesize their views, and integrate multiple sources of information from both the medical and family perspectives. Then, they can provide treatment plans and updates and communicate back to a family in a way that we know is going to work best for the family. To do that best, we must always consider both the medical and psychosocial needs of the family. If we forget one or the other, we are missing important information about how that family is doing, which will impact our care.

Tools for Providing Emotional Support 

Families need support from all different providers at all different times. You may be working with a family and notice they're distressed, tearful, or more withdrawn. When families and children are feeling distress they present in all different ways. You may notice families appear more anxious, they may be more verbal about their concerns, and they may also not spend as much time at the hospital in order to try to manage some of their distress. All of those are signs and reactions to the environment and to the stress that a family is experiencing. These are also signs for us to check in with the family.

There is a great resource through the American Board of Pediatrics called the Roadmap Project. Here is the link: https://www.abp.org/foundation/roadmap

The Roadmap Project was a collaboration between parents and providers on how to support emotional well-being and foster resilience in families who have children with chronic illness and other chronic conditions. Parents played a large role in the project. what we learned from them is that it's okay with families for anyone to ask how they and their child are doing, regardless if you are a mental health provider. Asking, "How are you?" can really help families feel like they're being cared for and supported. Some tools to do this in a way that may feel helpful for a family are to normalize and validate. When we normalize and validate, we're essentially telling a family that what they're feeling is not wrong. We are telling them that it makes sense for them to feel this way, it's often expected, or we hear the same thing from families who are in similar positions.

When you do this work, it is important to know your resources. We cannot always solve every problem, especially if they're outside our area of expertise and competence. If a family asks me a respiratory question, or about additional insurance resources, I am not going to be able to answer these questions. What I can do is acknowledge their distress, validate it, and then I can say,"I have someone who I think can help you", and refer them to another professional. I might say: "It makes complete sense you're feeling sad (or angry, frustrated, anxious, annoyed, etc.). There's a lot going on right now, and it is hard to manage it all. We have some additional resources that may be helpful. Is it okay if I let our respiratory therapist know? Is it okay if I contact our social worker?" We let the family know that these feelings and emotions are okay, they are never going to be wrong, and that we have access to resources that can potentially help them. I encourage you to take a look at the Project Roadmap website. There are awesome videos and examples of conversations between patients and providers that can help you navigate emotional and challenging situations with families.

Summary

In summary, the ICU is a very stressful place for patients and families. It is not just the medical illness itself that is a source of stress. What the ICU looks and feels like, what their child looks like, what a child has to go through, all contribute to families' stress.  In addition, the other things that the family is bringing in may impact their stress level, and how they manage or work through it. We know that this kind of stress can contribute to changes in mood and behavior, both in the short-term setting while a family is in the ICU, but also once they go home and go back to their routines. 

The goal of psychosocial care is to identify factors contributing to the distress, to find interventions to reduce it and to improve outcomes related to a patient or family's emotional functioning. Our multidisciplinary team and colleagues are key to achieving this goal. The team is key not just because of the medical care that we provide, but by the way we work together to implement psychosocial interventions in a way to best support a patient and family members. Finally, anyone - regardless of role - can support children and families in an ICU.  As families are navigating this extremely stressful, often traumatic, and overwhelming time, we all have the ability to provide that extra level of support.